Aleah was born a happy, healthy baby girl on July 10, 2010 at 8:43pm; exactly 34 years and 3 minutes after her father. At about 3 months, mommy and daddy noticed that her forehead was a little mis-shaped. We consulted her pediatrician and she noticed it as well. She said it was probably nothing that wouldn’t correctly itself eventually, but she referred us to a neurosurgeon (NS) just to be certain. She had her first appointment with a neurosurgeon at Children’s Hospital in Washington, D.C. at 4 months. The neurosurgeon took one look at Aleah and said she had something called coronal synostosis. Our lives forever changed.
The NS explained to us that this condition, could only be remedied via surgery. Our hearts sank. She explained the surgery and what it entailed and our hearts sank further. She stated that her success rate for this surgery was 100% and that the success rate in general was fairly high. However, knowing that my precious daughter would endure this lengthy surgery didn’t help. She explained that the biggest concern with this surgery was the lose of blood, and that there would perhaps be a need to do a blood transfusion-to which we could donate blood. The NS immediately ordered a CT scan and quickly discovered that Aleah did not have coronol synostosis, but an even rarer form of synostosis called fronto-sphenoidal. At the time of her diagnosis, there were only 6 known cases in the world. Aleah’s was the 7th. Very scary times.
Our next visit was with both the NS and the plastic surgeon (PS). They did their best to make us feel at ease about the decision, but its hard thinking about a baby being cut open ear to ear. However, we knew we would make the best decision which would afford Aleah the best outcome, and the rest would be up to God. We decided to go ahead with the surgery. The surgeons wanted to wait until she was 6 months to proceed with the surgery so that the bone would be harder and less pliable. Her surgery was scheduled for March 4, 2011.
Leading up to the surgery I did lots of research on Craniosynostosis. Surprisingly one of my co-workers had a niece who had craniosynostosis. She immediately put me in contact with her sister, who informed me of the website craniokids.org and cappskids.org, and gave me the number and email address of a very special lady named Summer. I joined the website and read all the stories, but was terrified of writing my own story. I guess it just made it all too real for me. But I stayed on there and read and looked at pictures, and scared myself several times. But I persevered because I knew I had to get through this and be prepared for Aleah. I made all of my family read the stories and view the pictures as well. I didn’t want anyone freaked out when they saw the swelling in the hospital. Everyone begrudgingly complied.
During this process I met a wonderful support system. I finally reached out to Summer, who may or may not know it, but she really got me through this process. She is truly an angel and an advocate for craniosynostosis. Whenever I had questions or needed to talk, she was always right there, as her little man had the surgery just months prior. The week before Aleah’s surgery I received a care basket from Summer. It contained so many valuables and special items that I used to get through Aleah’s stay in the hospital. Summer founded a website called craniocarebears.org that offers support and sends care packages to families of cranio patients everywhere. It’s truly phenomenal.
We reported to Children’s Hospital at 5:00 am. Aleah was surrounded by so many loved ones: her sister, grandparents, aunts, uncles, everyone was there to support Aleah (and mommy and daddy). She headed into surgery around 9:00 am. The wonderful nursing staff did an excellent job reporting back to us her progress. The surgery was stated to take six hours. By 12:45 the nurse stated that they were closing her up and by 1:45 Aleah was being wheeled to ICU. Her doctors said it was text book synostosis and they felt the surgery went exceedingly well.
We were taken to Aleah immediately where her head was bandaged like a mummy. She looked peaceful and sweet sleeping in a big bed. Luckily through all the research and support that I received prior to surgery, I knew her looks would change drastically over the next few days. That night, Aleah started to swell. It was subtle at first, but I knew the worst was ahead of us. She was still pretty knocked out from the drugs, but she would stir every few hours to feed. I gladly gave her plenty of fluids and then formula when she was ready. She still hadn’t fully awakened by the next morning. They kept her pain under wraps and did an excellent job tending to her.
Day two arrived and so did the swelling in full force. We were told to expect it to get worst, although I wasn’t sure how on earth it could. Aleah was still pretty sedated and hadn’t fully awakened. I was thankful for that. I didn’t want her in any pain or to even realize what was going on. She appeared to be fine aside from the swelling. I could tell that both eyes were going to swell shut and I was prepared for that. Day three and she left the ICU. Her eyes were completely swelled shut and she was still pretty groggy from the pain med. But she was actually doing great. They tried to wean her completely from the pain meds, so this day was a little rough in comparison. She was clearly frustrated from not being able to see, but singing helped and holding and rocking her. It was also the first day I was able to nurse her as well. She didn’t really care to be nursed though. I’m not sure if nursing applied too much pressure to the sides of her head, but she didn’t care for it. So we just stuck with the bottle of formula, which was fine with me.
Day three was definitely the roughest for me. Aleah did amazingly well, and she was still sleeping pretty well. But I wanted to see her pretty eyes and I wanted her to see me. But she knew that I was there, and we made it through somehow.
Day four, the doctors came in early that morning to examine her. They said what they said every morning, she’s doing excellent. As soon as they left, daddy was holding her and noticed a slit open in her eye. I’ve never been happier to see an eyeball in my life. She looked at us as if she was seeing us for the first time, and then she smiled. Our hearts melted. This morning was miraculous in that she hadn’t had any pain meds since the day before, she was eating great, and then her right eye started to open. The more and more her eye opened, the better she appeared to feel. Suddenly, she was sitting up in the crib playing with toys and baby talking and smiling. It was a wonderfully sight.
Mid day the PS came in and removed the bandages. This would be our first time seeing her new head shape. Aleah’s surgery didn’t require a drainage tube or anything, so her head primarily stayed wrapped since coming out of surgery. I’ve never seen a more perfect head in my life. I was amazed at how small the incision was and how they only shaved a very narrow strip of her hair. Barely visible due to all the hair she had on her head. The PS gave himself an A- and I concurred.
After that everything happened so fast. The NS came in to check on her and said, “ok..I think she can go home now.” I couldn’t believe it. She only went in for surgery on Friday and here it was Monday afternoon and they were telling me I could take her home. I didn’t feel the least bit uncomfortable or rushed to go home. She was eating well, off the pain meds, playing, had opened one eye, and wouldn’t you know it, the other eye started to open. This was probably the best Monday of my life!!!!! I gave Aleah a sponge bath, got her dressed, fed her and the next thing I know, the nurse was coming in with instructions and her discharge papers. We gladly packed up and left Children’s Hospital happy campers.
We took Aleah home that night and we were all relieved to be home and a happy family again. Aleah’s sister (Amaya-4 years old) was so excited to have her sister back. She did amazingly well through the surgery. I was a little concerned with her seeing Aleah with all the swelling. But we explained to her beforehand that her sister would be looking a bit different for a while, but that she was still the same little sister that she knew and loved. I told her that she’d have to take special care of her and help mommy and daddy so she could get well. Amaya came to see her every day at the hospital and didn’t cry once. I was amazed. Children are so strong and resilient.
Aleah recovered well and fast. I must say that we were extremely blessed because we didn’t have any problems once we got her home. She slept with us, as she normally did, and immediately went back to nursing. She woke up maybe once or twice the first night home, but for the remainder of her recovery she went right back to her sleep schedule, which consisted of her sleeping through the night. As far as I could tell she was not in any pain, so we didn’t have to give her pain meds. Her recovery was truly miraculous. The swelling persisted for another week or so and then slowly started to recede. I washed her scar each day and it became less and less noticeable. By week three the swelling was gone and her hair was growing over the scar. For those who didn’t know her, she looked like a perfectly healthy, happy baby who never went through a thing.
I am happy to report that Aleah is now almost 15 months old and is a happy, healthy child. I can honestly say she hasn’t had any setbacks. As with this surgery, nothing is 100%. I can still see minor imperfections with her head shape, but nothing too noticeable. In fact most people can’t notice it. But I’m her mommy! Overall I had an amazing experience, and her doctors and nurses at Children’s Hospital in Washington, D.C. are top notch. It was a very scary experience, but looking back on it, I’m glad we proceeded and did what was best for Aleah in the long run.
She’s doing marvelous 7months later!!!!!!!!!!!